Sensory Seizures?

Recently Rhett was admitted to Alberta Children's Hospital for LTM VEEG, long term monitoring video EEG. He has been experiencing a new seizure since November, which presents only in his right hand and sometimes he can feel a sensation in his brain.  On December 27 his meds were increased but this has had no affect on the seizures. Since Christmas Day we have documented over 200 episodes. I use the Track It Seizure App on my iphone to document. It's not perfect but it's easier than keeping a notebook with me.

Enter LTM VEEG.

EEG Hook up. Calm and patient...such a  trooper!

28 leads later and he's ready for business.

24hr EEG in hospital. Rhett was a trooper. An EEG rock star! He barely complained, never scratched or dislodged any of the 28 electrodes, and was content. Of course, he wished to be home, was embarrassed of the way he looked with his "long pony tail", wished they weren't spying on him and wanted me with him at all times but he handled all this so well.  Rhett really is amazing when it comes to all the hospital procedures. I'm so proud of him.

Taking in the view before being confined to bed for 24 hrs.

Results? Nothing conclusive. Nothing that we wanted to hear. The seizures are not showing on the EEG. Remember an EEG captures surface electrical activity not deep activity.
Of course, the EEG did show frontal lobe spikes, more frequently on the left but definitely from both side of the frontal lobe. This activity is indicative of other TS tumors and  not related to the right hand issues.

Passing the time with a little "screen time" on the ipad. 

So now what?

According to the Neuro Doc, we are to not worry about this. It may be anxiety related. Carry on as we are, no med changes, and "don't worry about it".

**sigh** Easier said than done and not an appropriate outcome for me. How do you tell a child to ignore the sensations in his hand and brain? How are they not related to something deeper? How is this anxiety driven? I can see how it causes anxiety. How is a MEG & MRI not requested as a deeper look? How are Jacksonian Sensory Seizures not considered?

Many more questions have been created and no answers.  This is another hard part of Tuberous Sclerosis and Epilepsy. I want to know why and now what. I want more for Rhett not just a pat he's doing great for one with TSC. Yes, he is doing great, but can't there be more? Better? Greater?

And so today, our hospital hangover is easing, slowly, and I am struggling with bitterness and anger towards the indifference of Neuro. I'll get past this. I always do, but it has to be worked through and addressed otherwise it eats me up. Sharing and writing and questioning and researching is part of that process. So here I am sharing with all of you. Watching the squirrels chase the blue jays out the sun room window, the dog sleeping in his bed beside me, and listening to the boys watch a movie before we venture outdoors. Onwards and onwards.

Until next time....

Weightless Wednesday's....Bariatric Surgery

Oh, merely sitting down to write this makes my stomach sink and I can hardly believe I am publicizing my vulnerability.

Weight and health are two topics that affect me in many ways. I have tried every diet on the planet and have had some success with all of them, if I'm able to follow them for more than a day. However, maintaining those diets aren't possible. The diet business is a multi-billion dollar industry that wants us to fail. Keeps us coming back, right? Keeps us spending money.

Almost a year ago I began the process of exploring Bariatric Surgery. Here in Canada, there are many criteria to meet in order to be eligible for health care funded surgery. Weight must be at a level that causes health risks and places a person at a very high BMI. Upon referral to the Calgary Bariatric Clinic, a patient must commit through behavioral changes, attending classes, many meetings with a Nurse Case Manager, Dietician, Pyschologist, while following suggestions to care for one's health concerns, as well as food journalling. Only after meeting all these criteria is a meeting with the surgeon scheduled.

I am now at the meeting with the surgeon stage. Next week in fact.

So exciting!!!

So scary!!!

I honestly am so looking forward to the outcome, a month after bariatric surgery when I am losing weight and eating again and healing. Thoughts of actual surgery make me a bit queasy so I shall focus on afterwards: increased health, better mobility, higher energy, smaller clothes, no back pain, no sleep apnea, lower blood pressure, increased confidence, fitting into seats, and active, fun with my family.

Chronicling this journey will help me stay focused and hopefully support other's who are considering Bariatric Surgery.  We all deserve information and support. There has been enough shame and hiding for anyone who is deemed morbidly obese. So, I am blowing the doors open on my fears, heart and excitement. Putting myself out there with you.

Hygge

This winter Hygge resonates with me. The simple enjoyment of Winter. Less busyness. Embracing the cold and snow. Cozying in. Making the home inviting, and simple in these snowy, cold Winter months.

Hyyge (Hyu-gah) originates in Denmark. It refers to a mental state of cozy, togetherness in the heart of winter. Until now, the only Danish part of my life is Lego. 😊  Learning about Hygge does not come from my family heritage yet it truly resonates with me.

To slow down, cozy up, have less commitments, play more, snuggle more, read, wear warm, woolen clothes, drink hot, spicy beverages, have warm homemade soups or chili simmering on the stove, play board games and turn the TV off, enjoy a quiet start to the day in the sun-room, watching the brave, winter birds feast from the feeders and brave the sassy squirrel who never hibernates, enjoy a muppet-esque dog sleeping by my side, content boys, loud boys, hungry boys, my boys, watch the falling snow, light more candles, read books, write here.......all of this is what Hygge means to me.

Sleepy muppet-pup.

As the snow falls and the temperature remains low, I hope you find your state of togetherness and winter peace today.

xx

He's Doing Great....

....all things considered, for a boy with TS, for a boy with multiple bilateral brain tumors, etc, etc.

 Sadly, this is not enough for me and I want so much more for this boy.  Those "he's doing so well" words feel trite.

As we wait to see Dr. Neuro, Rhett is thrilled to pose for a selfie. LOL Um, not so much.

Yes, I am grateful. Yes, Rhett's health could be oh, so much worse. Yes, we are ever so lucky to have Rhett.

Yes, we want more for him. We want HOPE and encouragement.

After, 100+ "seizures" since Christmas Day (and more before which were not documented), we now wait for testing. VEEG (24 hr stay, video EEG) MRI,  levels, and mental health.  The Neurologist is not convinced that the sensations Rhett is having are seizures as they are focal and affecting one part of his body, not a whole side.  BUT something is going on. The brain sensations, the hand sensation, the memory challenges, the processing challenges ("You're confusing me!").  So, we wait for the chances to get answers.

I hate waiting. Don't you?

Hopefully the VEEG will take place within 3-4 weeks.
MRI? A year?

As expected, CBD Oil was not recommended by Neuro. For a few reasons. All reasons which seem to be based on the Big Pharma control factor.  Oh, Big Pharma, I have such a tolerance-hate attitude towards you.

On a secondary note, a new referral for Opthamology at ACH has been requested as it has been several years since Ophthalmology has seen Rhett. Recently, our family Optometrist expressed concern at the size of the tumor in Rhett's right eye. According to the pictures, Dr. B took two weeks ago, the tumor has grown dramatically. Opthamology usually has a three month wait. Hopefully, it's not longer.

After a 2hr appointment, "hospital cake" is well deserved.

So, there ya have it. Rhett continues to seize several times a day and we are waiting for  the phone calls to inform us on upcoming appointment times.

Natural Health Services

Are you interested in CBD Oil? Today we spent a few hours of our time at Natural Health Services with the intent to secure CBD oil for seizure control, anxiety, and attention.

The following is my experience and impression of the The Natural Health Services Clinic in Calgary. May this give you a small insight into the process to assist in your decisions.

The clinic is modern, clean, busy and has state of the art on line booking and medical information forms. I appreciate receiving text reminders of upcoming appointments, and the ability to complete forms on line.

Upon arrival, we signed in with the friendly, very patient receptionist and then it was a short wait before we saw the Doctor. I love a short wait!

The doctor was friendly, inclusive of my son and asked questions about his health and schooling directly to him (as well as me of course.) It is much appreciated that Dr. M spoke directly to Rhett, not over him or around him. So many health care professionals do this, talk of him as if he's not there, and it is unnecessary, to say the least. I digress...

Once a plan is agreed upon, we then moved on to the "store" where a "Bud Specialist" is to educate and help me choose a Licensed Provider. This is where the waiting took place for us! An hour at least before we were able to meet with staff. The boys were antsy but oh so patient in the scheme of things!

Now that I am home, I feel I could have used more detail during the choosing process. The CBD oil prescription we need is "in production" and only one producer in Canada makes it. Ugh! What this means is registering with two producers (no biggie) and ordering two oils to combine and make what I need. A little nerve wracking, but not really since I've been dealing with dosages and splitting meds and blah blah blah for many years.

So now, we wait. After registering with the producers, we wait for the paperwork to be received on their end which should take 2-3 weeks. Then an order is place and shipped directly to our home.

This afternoon, my boy almost lifted off his chair when he heard me report to the doctor the 99 seizures since Christmas Day. As I write this the tally is up to 107, so that is one reason to try CBD oil. Well, a mere 107 reasons.

Special Hands

The Seizure Monster.

Partial Complex Seizures stemming from the Motor Cortex.

A tingly hand, sometimes a tingle in the brain. A hand that will not respond.

10-60 seconds.

48 Partial Complex Seizures since Christmas morning.

One med increase: another 175 mg of Trileptal.

One 9 yr old boy who worries that he is going to need surgery again, who is concerned that he has "that type where you have hundreds of seizures a day that cause damage."

Many hearts melting each time another Seizure Monster rears it's tingly head. Many prayers being sent up for Rhett. Many thoughts and plans and wishes mulled over. Many questions. Many fears. Many hugs and laughs and continuing on.

A few hidden, quiet tears.

The Closing of Christmas

Another Christmas season has come to an end.

The month of December was quieter than usual, in some ways, and jam packed from the 21st on.

We were blessed to ride the Polar Express. It was magical, even to our older children and adults. The Alberta Prairie Railway puts together a Christmas experience worth attending, especially if your children are under 10yrs.  We loved the whole experience! The staff dancing to Hot Chocolate and serving up delicious chocolatey beverage in mugs that are gifted to us. Followed by a gooey, chocolate chip cookie, the reading of the story The Polar Express and then arriving in the North Pole to see Santa and his Elves waiting for the train. Hearing the children yell "Back it up! Back it up! " to encourage the engineer to reverse and pick up the jolly old elf himself, gave me goosebumps.



It truly was a sweet experience and one that our boys will remember forever.

Spending time with those you love, family or friends is an important aspect of Christmas. This year we traveled to my brother's and were blessed to stay with them for two nights, celebrating Christmas with a multitude of family members. Even though it has been years since seeing my SIL's family they opened their hearts to the boys. We all felt special and included. That is how we should all feel on Christmas Day.

Our 5 hour road trip home included two stops to visit with special cousins and friends. It was a long, long day yet worth the effort to spend time with friends & family. Afterward there was still a 3 hr drive facing us in the midst of a gale force Chinook. The weather change by 20 degrees and the winds wreaked havoc on the roads. Thankfully, Brad was driving, the boys were sleeping and we made it home safe and sound.

As we wind down from Christmas, and contemplate taking the decorations down I find that the New Year is on my mind. Resolutions? No. The need to reorganize and refocus? Yes. First, lets start with the home cause it is a Christmas disaster!